July is National Fragile X Awareness Month. It is 31 days during the year that we set aside for a more concerted, joint effort to raise awareness of Fragile X. Last year, our awareness messages in July alone reached more than 1 million people on social media.
This year, we are reaching even more people, and delivering messages more relevant to them because awareness comes in many forms:
Friends and Family. The strongest voice is your own. Speaking to your friends and family about your life with Fragile X is the most effective way to spread awareness.
- Medical Providers. Even now, families are receiving incorrect medical advice about Fragile X from their doctors and clinicians. The lack of awareness has also resulted in FXTAS often being misdiagnosed as Parkinson’s.
- Educators. Often it is teachers who first raise the possibility of Fragile X syndrome, and, of course, teachers are instrumental in teaching and maturing our children. We want to help them know how best to teach our children.
- Policy Makers. The federal government provides the lion share of the research funding, and families with Fragile X can be uniquely affected by federal policies. Speaking to members of Congress throughout the year about Fragile X is critical to continuing this vital funding and ensuring policies to help families living with Fragile X.
What are we doing?
Throughout July, we will push out daily messages for sharing on social media and lead and participate in events like ringing the opening bell at the NYSE to generate attention.
Provide posters for you to post in your community. You can download one at fragilex.org/awareness.
Fund targeted outreach campaigns to educators, doctors, clinicians, and genetic counselors to ensure they have the latest information, such as our consensus documents for patient care and support at fragilex.org/consensus.
Organize Congressional visits during August while members of Congress are working in their districts.
What can you do?
- Hang up the a poster in your community.
- Share our messages on social media.
Volunteer as an NFXF STAR Local Advocate to visit with your members of Congress while they are in their home offices. (fragilex.org/advocacy)
Of course continuing your financial support of the NFXF directly helps our awareness efforts in July and throughout the year. To a teacher, doctor, or a neighbor. Together, our voices are stronger.
For nearly 35 years, the NFXF has worked to unite the Fragile X Community to help create awareness. We’ve made great progress, but there is still much work to do. Please help continue this important effort!